Seven Common Myths About Celiac Disease and Gluten-free Eating

"The tiniest crumbs of bread far exceed 20ppm..."

Well, of course. 20ppm is a rate, not an amount. If a particular bread tests at 2000ppm, then the whole loaf is 2000ppm and the tiniest crumb is also 2000ppm. But what's important for us as celiacs is the total amount of gluten consumed, not how strong in gluten some part of what we consume may be. If I eat a Chinese dish that has wheat-based soy sauce in it, it makes a difference whether I eat lots of the sauce or not. The sauce my be 150ppm gluten, and if I only have a teaspoon of it, it still 150ppm, but I get less gluten than if I ate a couple of tablespoons of the sauce.

The whole "20ppm" standard encourages people to think the wrong way about gluten consumption. Something expressed in milligrams per serving or micrograms per serving would be much more useful.

Complete rubbish. My specialist advised crumb contamination is not a problem. Apart from being a specialist he's also celiac, as is his daughter.

I disagree with Myth #1 regarding rice is okay for celiacs. Please see Cyrex Labs Array #4 for IgA and IgG testing of Gluten Cross Reactive Foods. Rice, including other foods are gluten cross reactive and can cause a immune reaction similar to gluten.

I disagree with Myth #1 regarding rice is okay for celiacs. Please see Cyrex Labs Array #4 for IgA and IgG testing of Gluten Cross Reactive Foods. Rice, including other foods are gluten cross reactive and can cause a immune reaction similar to gluten.

This is incorrect. People with celiac disease do not react to rice gluten the same way they do to secalin from rye, hordein from barley or gluten from wheat. Plain rice of all types is safe for people with celiac disease to consume. Ask any celiac expert.

Complete rubbish. My specialist advised crumb contamination is not a problem. Apart from being a specialist he's also celiac, as is his daughter.

Please provide the name of your specialist. I'd love to hear his faulty rationale for such a misinformed view. Let's imagine you're making gluten-free toast that weighs 1 ounce (about 28 g) per slice. In order to eat under 20ppm gluten, your contaminated crumb would need to weigh something like .00056 grams. Even if we adjust for the actual weight of the gluten relative to the crumb itself, that would still make the crumb, literally, microscopic. More likely, a crumb would weigh something like a few hundredths of a gram. This would be more than enough to trigger a reaction in most people with celiac disease. Your specialist is off by many orders of magnitude.

"The tiniest crumbs of bread far exceed 20ppm..."

 

Well, of course. 20ppm is a rate, not an amount. If a particular bread tests at 2000ppm, then the whole loaf is 2000ppm and the tiniest crumb is also 2000ppm. But what's important for us as celiacs is the total amount of gluten consumed, not how strong in gluten some part of what we consume may be. If I eat a Chinese dish that has wheat-based soy sauce in it, it makes a difference whether I eat lots of the sauce or not. The sauce my be 150ppm gluten, and if I only have a teaspoon of it, it still 150ppm, but I get less gluten than if I ate a couple of tablespoons of the sauce.

 

The whole "20ppm" standard encourages people to think the wrong way about gluten consumption. Something expressed in milligrams per serving or micrograms per serving would be much more useful.

20ppm is not a rate. 20ppm gluten is a ratio, a ratio that is based on an amount, and a ratio that is uniform and scalable. It can be represented by a fraction 20/1000000, which equals .00002. Let's imagine eating a dinner, albeit a big dinner, that weighs a total of 1 kilogram (1000 g). 1000g times .00002 equals .02 gram, or two-one-hundreths of a gram. A microscopic amount. Regarding your soy sauce example, in both cases, you have still exceeded the total amount needed to cause an adverse gluten reaction. Said amount would be based on a ratio of your total dietary intake to the amount of gluten included in that total. If the gluten exceeds more than .00002 of that total, you are risking adverse reactions. I hope this helps.

What qualifies someone as being a "celiac expert" or a "celiac specialist"? Here's a fact for your list: Celiac disease affects each patient differently. Some are more sensitive than others. I cannot tolerate any ppm, I cannot tolerate food items that were on the unsafe list when I was diagnosed but have been moved to the safe list. 20ppm is less than 1/8th of a teaspoon. Just because someone has celiac disease doesn't mean they know it all. Just because someones career is studying celiac disease doesn't make them an expert. We are all individuals with different tolerances. As for rice, it depends on where the rice is stored before packaging. The same for raw beans! I wish those who make statements would use the term "for most with celiac" and I wish packaging would be required to state the real ppm amount instead of being able to say "gluten free"!

One of the confusions with rice is between plain unseasoned, unfortified rice vs. packaged rice that has been fortified or contains seasonings. The latter might have gluten that has been added or its various "fortifications", flavorings, or seasonings might have been cross-contaminated by gluten somewhere down the line.

I am reading Dr. Alessio Fasano's new book called Gluten Freedom. On pp 126-127 he states "consuming up to 10 mg (approximately one-eighth teaspoon of flour) of gluten per day is safe for most people with celiac disease." Really?? That's a lot of bread crumbs or quite a bit of contamination in Domino's. Can this be true?? Dr. Fasano is founder of the Center for Celiac Research at Massachusetts General Hospital and visiting professor at Harvard Medical School. Am I misinterpreting what he is saying?

Thank you for this article! My husband and three children have celiac disease. My understanding is that even very small amounts of gluten (microscopic) can begin an immune response where the immune system begins attacking not only the gluten, but also their body (usually the gut, but two daughters develop tremors with gluten exposure, which means it's attacking their nervous system, also). The gluten acts like an "on" switch that makes the body attack itself. Is that correct? I find this helps others get a better perspective when explaining how harmful even crumbs are.

Excellent article and excellent explanations by Jefferson Adams. Just goes to show you how misinformed people are. I was surprised by people's comments on this article. Misinformed.

I disagree with Myth #1 regarding rice is okay for celiacs. Please see Cyrex Labs Array #4 for IgA and IgG testing of Gluten Cross Reactive Foods. Rice, including other foods are gluten cross reactive and can cause a immune reaction similar to gluten.

I have to agree with you. Perhaps we don't know as much as we think we know about celiac disease. I haven't read the references you cite, but I definitely react negatively to rice and rice-based "gluten free" foods. Rice pasta, breads, etc. all result in intestinal discomfort, bloating, and diarrhea, for me. I am a diagnosed celiac, so I know the symptoms. I will eat it from time to time, because it's not "supposed" to affect me; but it always does. Now it's out of my diet.